Human cost of drug dilemmas

"NOBODY with cancer should ever have to pay for the drugs they need. It's just not fair."

With those few words, mother of two Rose Harrison cut to the heart of one of the most difficult issues facing the NHS today: rationing.

Rose, 59, from Barlby, was diagnosed with an aggressive form of kidney cancer in April last year.

When traditional chemotherapy failed, she pinned her hopes on a new, life-prolonging drug, Sunitinib, which kidney cancer experts say can extend life.

Health bosses in North Yorkshire refused to pay for the drug, however, pointing that out the drug had not been approved for general use by the National Institute for Health and Clinical Excellence (NICE).

When the NHS refused to fund it, Rose, pictured above, spent nearly £10,000 of her own money.

The drug did give her more precious months of life than she would otherwise have enjoyed. But it is no longer working and she has only months to live.

She remains determined, however, to continue her fight with local health chiefs at the primary care trust (PCT).

The denial of drugs which might help desperately ill patients is "just not fair", she said.

"I want to keep fighting my case with the PCT to help other people in my situation in the future."

Health bosses, however, face a terrible dilemma. There will never be enough money to pay for everything.

So should cancer patients always be given drugs they hope might help, even if there is a small chance they will do any good?

Or do we have to accept that rationing of medicines is here to stay?

The relative

AS far as Leslie Dobbin is concerned, no cancer patient should ever be denied treatment that might help save or prolong their life.

Last year, he had to watch his younger brother Ian, 55, who lived in Acomb, die of acute myeloid leukaemia.

The father-of-two's last few months and weeks of life were made much harder because of the acute stress and worry he went though when health bosses refused to fund a new type of chemotherapy, Leslie says.

Ian was successfully treated with chemotherapy in 2006, but a rare complication damaged his brain and left him barely able to walk.

When his cancer returned last year, his consultants did not want to give him more of the same normal chemotherapy because of the problems he had first time.

Instead, they identified a drug called clofarabine as his only chance. But because the drug had not yet been licensed for the treatment of leukaemia, health bosses at the North Yorkshire and York Primary Care Trust refused.

That decision was eventually overturned. But Ian still faced a race against time to find a bone marrow donor before treatment could begin.

A donor was eventually found, but Ian died before a bone marrow transplant could be performed.

In the end, Leslie admits, clofarabine did not save his brother.

"But it might have. It would have given him hope.

"He had to fight tooth and nail to get that drug. He was stressed all the time. It shouldn't be like that. When you have life-threatening diseases, you can't be running about going to all your MPs and writing letters to Parliament. It's just not right.

"To be told there is something available, but we cannot afford it so you cannot have it: that's wrong."

What makes Leslie particularly angry is that while health bosses are denying patients potentially life-saving drugs, they are wasting millions of pounds of health cash.

"They are completely wasting money all the time, the way the NHS is run," he said. "It is unbelievable and I really get upset when I think about it. Ian worked all his life, he paid into the system, and what did he get for it? He got nothing.

"I'm 64 this year, but I'm glad I'm 64 and not 24. I'm glad I'm at the end of my life. I would hate to think that I was starting all over again the way things are going."

The health boss

STORIES such as those of Rose Harrison and Ian Dobbin are upsetting, admits Dr Peter Brambleby, the director of public health at the North Yorkshire and York Primary Care Trust.

And cases where a patient's last weeks are made worse by stress and worry over whether they will be able to get treatment are a "real indictment of the system".

Part of the problem, he says, is to do with false hope and unrealistic expectation.

There has to be an obligation on both medical professionals and on drug manufacturers to give honest opinions, and accurate information on success rates, so as not to create false expectations.

What really hurts patients, he says, is when they see divisions within the NHS, and disagreements about whether or not a treatment will work.

Nevertheless, he stresses, the harsh reality is that the money available to the NHS is limited, and not everything can be funded. "And I think the public accept that there is not a bottomless pit," he said.

The key thing for health administrators is to ensure that what money is available is spent fairly, and to best possible effect, he said.

Waste has to be cut, and a proper system established for deciding what should and should not be funded.

There is undoubtedly waste in the NHS, Dr Brambleby said - and everybody working in the health system has a duty to help eradicate it.

In a public report entitled Investing In Health posted in full on the PCT website, he stresses this point: "At the end of the day the public pays the price for our inefficiencies, and the currency in which they pay is not cash but avoidable distress, disability and death."

The major waste does not lie in having too many managers, he insists - good management is necessary for the NHS to be able to make the best use of its resources.

But there is too much "target chasing", he says - and there is inefficiency within medical practice as well.

In his previous job in Norfolk, for example, work was carried out on the final day of cancer patients' lives.

"It was very striking," he said. "Somebody was sent for a chest X-ray three hours before they died. Why? There were people who died still connected to active chemotherapy. Why?"

Even eliminating waste, however, will not allow the NHS to pay for everything, he says. That is why there has to be a "rational debate about rationing".

His Investing In Health report will go for discussion before a meeting of the North Yorkshire Health Scrutiny Committee on February 18, where it will be discussed by elected councillors.

It poses a number of challenges, he says - not least how much of the available budget should be spent on various major health programmes, such as cancer, or heart and cardiovascular care.

The truth is, however, that North Yorkshire PCT already spends more than many other primary care trusts on cancer treatment, he says.

So the cancer budget is not going to increase - and it is up to medics to spend wisely.

This can involve difficult decisions. In cases where a drug or treatment has NICE approval, it is not so bad. The real headaches lie with drugs such as Sunitinib, where there is no national guidance or consensus over whether the drug is effective.

Decisions made locally over such drugs have to be seen to be made fairly, Dr Brambleby says.

Those decisions are not affected by the cash-strapped PCTs debt problems, he stresses. The organisation has given a commitment that its attempts to reduce debt will not be at the cost of patient care.

Nevertheless, cash is limited. So there is a system in place in North Yorkshire to try to ensure that it is spent fairly and effectively.

There are five steps involved in cancer treatment, Dr Brambleby says, and decisions have to be made on how the total budget should be allocated between them.

The steps are:

* Preventive work - such as trying to help people give up smoking* Diagnosis* Treatment that aims for a cure* Treatment that aims to maintain quality of life * Helping patients to have a good death.

All the above are important. Dr Brambleby says - but the more that is spent on one, the less is available for the others.

Work on trying to prevent people getting cancer in the first place can make a huge difference. But it will leave less money to treat patients who do develop cancer.

"So here's the dilemma - and it is a question I would genuinely welcome letters from readers of The Press about," he said.

"Which of these five do we make a priority. If we spend it all on treatments trying to achieve a cure, or to improve the quality of active life, it is not available for diagnosis or prevention.

"That's the dilemma, and it is a wickedly difficult one."

The MP

SELBY MP John Grogan backed Rose Harrison's fight to have Sunitinib prescribed on the health service.

While the drug wasn't a cure, Rose's consultant had said it could have some effect in helping to prolong life. "That's why I supported her," Mr Grogan said.

He accepted, however, that health bosses cannot provide every drug patients thought might help.

Even if taxes were increased, there would simply "never be enough money to do everything", he said.

Day in and day out, doctors and health bosses were faced with appallingly difficult choices and decisions to make, Mr Grogan said - especially in cases such as that of Rose Harrison, where there was not yet any clear national guidance on whether or not a drug was recommended for use in a particular situation.

Money spent on one treatment left less money to spend on other forms of treatment, he pointed out - which made it difficult to decide over a drug which may or may not be effective.

"Decisions have to be made," he said. "I'm glad it is they health bosses who have to make the decisions, and not me."